Tuesday, February 01, 2011

Does he SEE??

Today I took Aleksa and Wesley to the Opthalmologist.  This is the one appointment that I have been looking forward to the most for both kids, second being Wesley's PT eval where I learned what stretches to do for him.  The next two are Ortho (Thursday) and GI (next week) for Wesley where we'll also get some answers for him.

Today we got quite a few answers, though.

First, Aleksa.  She's near sighted, fairly significantly (a script almost double Emma's), and will be getting glasses immediately.  We went ahead and picked some out there in the office and when I bring my other 4 kids to their eye appointments later this month, they will bring the new glasses and 'fit' them to the kids at that time.  I'm glad to hear this is what's going on with her, since it answers some questions about her depth perception and going down stairs and ramps and such.  She seems like she'll wear the glasses fairly well!  Here's hoping...

Now, Wesley.

Wesley is blind.

Although we were told this months ago before we adopted him, we knew that Wesley was able to follow us around a room and follow objects up to about 3 feet away with good accuracy.  He seems to be able to distinguish people even without their voices present.  It seems like he can actually see pretty well.

But he can't.

Wesley's optic nerve has "severe atrophy and is misshapen" on both eyes.  In addition to that, he is significantly nearsighted.  Here's some info straight from PubMed Health website about the optic nerve:

"The optic nerve carries images of what we see from the eye to the brain."
"Optic nerve atrophy causes vision to dim and reduces the field of vision. The ability to see fine detail will also be lost. Colors will seem faded. The pupil reaction to light will diminish and may eventually be lost."
"Damage from optic nerve atrophy cannot be reversed. The underlying disease must be found and treated, if possible, to prevent further loss."

We were told that Wesley may have "I can see you waving 3' away" vision, or he may have "I can count your fingers 2' away" vision.  But even with glasses he's not likely to have any better vision than that.  Realistically, he should be completely blind based on the way his optic nerve looks.  Obviously... he's not :).

As far as preparing for "life" with Wesley, we should focus on bright distinctive colors with high contrast that are close up for anything that we want him to learn.  Using a communication device may or may not be feasible, but something with broad ranges of possibilities of size, color, and contrast will likely be a possibility. 

We were also told that glasses may or may not even help him.  And he hates them.  Passionately.  The mommy in me that wants to be able to do the best that is possible for him really wants to try the glasses.  Maybe he'll see more.  Maybe he'll get used to them too.  And if not, then we have wasted $100 but gave it our best shot.  So, that's what we'll do.

Time for reality.  Next is orthopedic doctor on Thursday where I'll find out if his hips are dislocated or not and if he can do weight bearing in PT or not.  It will make a huge difference on what direction we go from here with PT and what type of orthotics we get him, etc. 

Now we have 4 kids in glasses.  When we have the other 4 kids' vision evaluated later this month, do you think we'll have 5 or 6?  We shall see...


  1. I am sorry for the disappointing news about Wesley. Even though you knew it was possible, it had to be difficult to hear. Sending HUGS my friend!!!!


  2. Meredith, I am sorry to hear about Wesley's vision. Just wanted to share that my dad is blind and accomplishes much despite it all. He has received services from his state dept for the blind to do white cane training and computer training. He uses a computer and sends me email regularly. He also receives books on tape/cd from the library of congress mailed free of charge (he says they have kids things, too). He has less than 1% of his vision remaining but still wears glasses/contacts to help that little bit. He says it makes a difference, granted his visual concerns are different (his is an issue with the retina).


  3. I am so sorry to hear of Wesley's diagnosis, but I am so thankful that he is there as your son to receive all the love and care that he will need.
    Prayers being said for all of you.

  4. I hope that I am doing this right, but you might want to check out this blog
    kinnickandcarver.blogspot.com It is a blog that I follow where the kiddos have major vision issues. Anyways, the mom has many resources included and she speaks of one that sends the kids books like every six months that are for the visually impaired. Here's hoping her blog might save you some searchig time.


  5. Meredith, I'm sorry Wesley's vision is so bad. It's amazing just how much they can tell us about our children's eyes, we truly are blessed to have such information at our disposal. Wesley's eyes may not see well, but it is obvious his heart sees his loving family just fine! Bright colors are so cheery anyway, don't you think? ;o) blessings to you all.

  6. Ahhh ... Meredith. I'm thinking and praying for you all. Praise God you got him out of Ukraine before transfer - I can't imagine that his care would have been tailored to him not seeing - especially as he aged. Max and Ivanna also need glasses. Been researching specs4us.com have you heard of it before??

  7. I'm sorry that you got this news about Wesley and his vision. There is a great place here in Kansas City called the Center for Children with Visual Impairments. We were able to have a therapist from there come to our home and work with my son when he was a baby and appeared to have vision issues. They thought he had cortical visual impairment, but later called it delayed visual maturation and it is still a mystery to all of us regarding what was going on with him. We still question some vision issues, but drs. can't find anything. You may have already checked, but if there is a center like this near you...they would be a wonderful resource for you. Here in KC, they are able to get kids to do some amazing things.

    You are such a great mom! So on top of it with your children and their appointments! I only have one with special needs and I understand the amount of time/money/energy we have spent...worth every bit of it, of course!

  8. Hello -
    My name is Amanda and I have been following your blog for awhile. I am a braillist for a Visually impaired third grader. If you need to know anything about whats available and stuff like that let me know. Ajholmes21@aol.com Also their is a free school where you can learn braille if that is needed

  9. Destiny's MRI showed that her optic nerves were "grossly underdelveoped", and no one ever believed us when we said that we believed that she was able to see. Of course we have no idea what she saw, or how well, but it was obvious that she was able to see something. We stuck with the belief that although her sight was not good, however her eyes and brain were able to registar what she did see, was what she was used to. So she knew who each fuzzy blob was, and that was good enough for us;p

    Texture may be a good way to help Wesley with communication boards, buttons, etc. If he can associate diffent textures to different needs, then he won't have to rely on his vision. Just a thought. Audio boards, buttons etc may be a good choice as well, provided that his hearing is good.